Family keeping Information from the Patient

  1. Hello All:

    I am a nursing student researching the ethical dilemma of a family's wish to keep information from a patient. As I research this topic, I find that there is limited EBP research related to the topic. This topic maybe a non-issue since patient's rights laws are so conclusive about the right of a patient's medical information. Can someone point me to some articles or keywords related to this topic? perhaps I am not using the right terms for the search? thank you all

    Rafael
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  2. 13 Comments

  3. by   klone
    What are the basic principles of healthcare ethics? Can you name them? (there are like 4 or 5)
  4. by   azhiker96
    You might look at nursing theories and relate how keeping information from the patient is either in line or in conflict with the theory. I like Jean Watson but there are many and your school may have a favorite.

    Consider that keeping information from a patient includes deception. After all, what do you say when the patient asks directly about their test results, diagnosis, prognosis?

    I don't know if anyone has done a study. You may have more luck finding articles using the search words withholding and dying. Here is an article from an oncology journal.

    When the Family Requests Withholding the Diagnosis: Who Owns the Truth?
  5. by   gallor31
    The four principles we've talked about in class are
    Autonomy: In medicine, autonomy refers to the right of the patient to retain control over his or her body,
    Beneficence: This principle states that health care providers must do all they can to benefit the patient in each situation.
    non-maleficence (do no harm).
    justice: The principle of justice states that there should be an element of fairness in all medical decisions.

    I think, non-maleficence may be used to justify keeping some diagnosis information from the patient. At least it presents a serious dilemma for the health care professional. Still laws seem clear enough to make any gray area almost non-non-existant.
  6. by   klone
    Where do you think autonomy fits in there with your scenario? What do you do when there are two different competing principles?

    And why do you think providing factual information would be harming the patient?
  7. by   AJJKRN
    Check out the role of ethic committees as well...

    Ethics committee | definition of ethics committee by Medical dictionary
  8. by   JKL33
    Quote from gallor31
    I think, non-maleficence may be used to justify keeping some diagnosis information from the patient.
    You are correct, concerns related to non-maleficence (whether labeled as such or not) are THE main concern people may use in an attempt to justify the avoidance of telling the truth in your scenario. A simple example of this would be a family's concern that the patient is bound to become exceedingly anxious or depressed if s/he were to know the diagnosis. The family believes that harm could come from inducing or worsening anxiety/depression.

    Next you must ask yourself more about autonomy, which you also have listed. What kinds of conditions are necessary in order for autonomy to be respected?
  9. by   Here.I.Stand
    The concept of "paternalism" comes to mind. I'm reading the book "Radium Girls" for the second time so this concept was on my mind anyway -- the story is primarily set in the 1910s-1930s, and they talk about how back in those days, physicians would NOT tell a pt they were dying. These poor women were suing their former employer for damages after being stricken with occupational radiation poisoning.

    There is an absolutely GUT WRENCHING scene where this poor woman who was down to 70 lbs, unable to care for her children or home, had lost all her teeth, and literally collected pieces of her mandible in a jewely box as the pieces fell out into her mouth. She hears in open court, as the attorneys is questioning her dr, FOR THE FIRST TIME that she is dying. The author describes her wails and sobs as she is carried out of the courtroom, and her husband's sobs as well, as she hears she is dying.

    It's been 13 yrs since I took my medical ethics class, and this isn't a hugely common issue anymore, but clear as day I remembered the prof discussing "paternalism." This woman had not been told that she was dying because the thinking was they can't handle that information, and will give up hope.

    In reality, pts have autonomy and have the RIGHT to know.
  10. by   meanmaryjean
    For all you following at home ^^^^ THIS ^^^^ is how one asks for assistance with an assignment.

    Note the OP did NOT just copy- and- paste the assignment and expect others to do the work for him/ her.

    Well done OP!
  11. by   klone
    Quote from meanmaryjean
    For all you following at home ^^^^ THIS ^^^^ is how one asks for assistance with an assignment.

    Note the OP did NOT just copy- and- paste the assignment and expect others to do the work for him/ her.

    Well done OP!
    Yep, I actually enjoy helping students when they show that they are actually putting effort into learning it, rather than just hoping to be spoonfed an answer.
  12. by   Susie2310
    Quote from JKL33
    You are correct, concerns related to non-maleficence (whether labeled as such or not) are THE main concern people may use in an attempt to justify the avoidance of telling the truth in your scenario. A simple example of this would be a family's concern that the patient is bound to become exceedingly anxious or depressed if s/he were to know the diagnosis. The family believes that harm could come from inducing or worsening anxiety/depression.

    Next you must ask yourself more about autonomy, which you also have listed. What kinds of conditions are necessary in order for autonomy to be respected?
    Sometimes the family are motivated (consciously or unconsciously) by their desire to avoid the inconvenience/other undesired effects that would result for themselves as a result of truthfully telling the patient their diagnosis. Sometimes this includes their desire to avoid pain for themselves as they anticipate the patient's suffering in the full knowledge of their diagnosis.

    They may also avoid truthful disclosure to avoid the pain that they may experience in telling the patient their diagnosis (imparting bad news) and experiencing the patient's reaction.
    Last edit by Susie2310 on Nov 17
  13. by   Susie2310
    Quote from Here.I.Stand
    The concept of "paternalism" comes to mind. I'm reading the book "Radium Girls" for the second time so this concept was on my mind anyway -- the story is primarily set in the 1910s-1930s, and they talk about how back in those days, physicians would NOT tell a pt they were dying. These poor women were suing their former employer for damages after being stricken with occupational radiation poisoning.

    There is an absolutely GUT WRENCHING scene where this poor woman who was down to 70 lbs, unable to care for her children or home, had lost all her teeth, and literally collected pieces of her mandible in a jewely box as the pieces fell out into her mouth. She hears in open court, as the attorneys is questioning her dr, FOR THE FIRST TIME that she is dying. The author describes her wails and sobs as she is carried out of the courtroom, and her husband's sobs as well, as she hears she is dying.

    It's been 13 yrs since I took my medical ethics class, and this isn't a hugely common issue anymore, but clear as day I remembered the prof discussing "paternalism." This woman had not been told that she was dying because the thinking was they can't handle that information, and will give up hope.

    In reality, pts have autonomy and have the RIGHT to know.
    I think this post says it the best. Patients have autonomy and have the RIGHT to know.

    The only exception I can think of is if the PATIENT has told their family they don't WANT to know their diagnosis.
  14. by   JKL33
    Paternalism definitely comes to mind as mentioned above. Unfortunately basic texts may represent it as if it's mostly a physician thing, when in reality many actions of truth-withholding by family members and others derive from that same spirit of believing one "knows better" than the patient and therefore should be able to circumvent patient autonomy.

    Agree 100% with the comment #10 as well. So many times the effort isn't as much about the patient as it's made out to be. Not that there is any malicious intent whatsoever...more just human nature.

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